just asking

just asking

User

Posted 07 Apr 2021 at 13:08

Thanks Lynne.

Do you think it would be worth asking about being tested for BRCA....my mum died from breast cancer....i did ask at the beginning 5 years ago, but the Macmillan nurse said no point as my mum wasn't here to test as well?

Are there any trials for recurrent PCa that you know of?

Shaun

User

Posted 07 Apr 2021 at 13:35

Originally Posted by: Online Community Member

I think if the oncologist doesn't suggest a full set of scans, you should ask why not?

Agree. You should ask for a PSMA PET scan. They really need to know exactly where the cancer is before going for more treatment. Ideally, do this before starting hormone therapy, as the hormone therapy reduces the sensitivity of the scan. There may still be some curative treatment options if they know exactly where it is.

User

Posted 07 Apr 2021 at 13:53

Unlikely - unless your mum got breast cancer when she was in her 30s / early 40s and you were diagnosed in your 40s or younger.

Trials are not necessarily relevant to you until you know what is going on - is it purely a recurrence in your prostate, or a new prostate cancer that has developed in the healthy bit of prostate that was left after your first RT or has the cancer metastasised? You won't know until you have scans.

Let's see what plan the MDT comes up with.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2021 at 10:32

Just spoke to the Oncologist ( first time in nearly 3 years ).

The MRI scan that the Urologist sent me for is not conclusive that it is cancer but from my PSA....latest was 4.1

3 weeks ago, she says the cancer is back.

She is referring me to Liverpool for a PSMA PET scan....

She says it can take two to three months to get the scan.....we asked about paying private ( about £2500 ) but she said waiting till it is offered on the NHS will not make any great difference....

So it's back to the waiting game.

If it is back in the prostate, I'm sure I have read about a trial on here where it comes back after first line RT, having the prostate removed........Does anyone have any info as to where this is being done?

Shaun

User

Posted 26 Apr 2021 at 15:03

The difficulty with prostate removal after RT is that it will be non nerve sparing and therefore ED will be an almost certainty - incontinence is also much more likely. Depending on how much radiation you had to the pelvic area, targeted RT or focal therapy to the recurrence might be possible. If the active cancer is elsewhere in your body, RT to the mets may also be possible.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Apr 2021 at 10:05

Thanks for your reply Lyn..........do you think it would be worth paying for the scan privately to speed things up or just wait as the Onco has said till it comes on the NHS......my worry is that in 2-3 months my psa will most likely be over 8 by the way it is rising?

Shaun

User

Posted 30 Apr 2021 at 18:21

I got a copy of the Oncologists referral letter for my PSMA scan at the Royal Liverpool hospital.

I rang to enquire about going private as my onco thought the waiting time was 2-3 months, but was told that they do not do private and that the waiting list is 4-6 weeks and not 2-3 months so i feel a bit easier about waiting.

Letter says that I have had an MRI scan but it was unclear if it showed prostate infection or as the onco described it, Local recurrence........

She said at diagnosis , I was T4 N0 M0........the T4 surprised me as I always thought I'd been told T3. I thought T4 was when it had spread?

So it's back to the waiting.

At the minute i am 3 weeks into a 4 week course of antibiotics for what we think was another prostate infection.......has been almost gone for the last fortnight, but now the symptoms are back.

Shaun

User

Posted 30 Apr 2021 at 20:30

T4 means that it had already broken through the outer skin of the prostate and into the surrounding tissue - that isn't the same as being metastatic, which means it has spread to bones, soft organs or lymphatic system.

Good luck with trying to see a surgeon about salvage RP but please do be cautious - don't agree to salvage surgery unless / until it is confirmed by detailed scans that the recurrence is within the prostate. If it has spread to other organs or extensively within the pelvis (as is likely with a T4), removing the prostate is going to cause a whole lot of discomfort & potential side effects for no gain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Apr 2021 at 21:15

Thank you Lyn

User

Posted 19 Jun 2021 at 08:49

Set off for my PSMA scan in Liverpool on Thursday afternoon, was on the M62 when we got a call from the hospital to tell us they had to cancel the scan as the PSMA had failed........felt like a kick in the stomach but these things happen.

Got a new appointment for in 3 weeks......fingers crossed that one goes ahead.

Shaun

User

Posted 19 Jun 2021 at 15:17

Unfortunately, there is a lack of back up, so if something goes wrong in producing the tracer they have to cancel. It happened to me and I travelled to London from Devon before receiving notification it was cancelled. I did ask about this and was told all the facilities offering this in London would be affected. Hopefully, the situation may be better in London now with more reciprical arrangements but as the nuclear tracer has only a short half life, it could not be got to Liverpool frm London in time and those doing the PSMA scan are pretty few and far between, particularly outside greater London.

Hope you get the scan done as rescheduled.

Barry

User

Posted 26 Jul 2021 at 17:00

Hi all.

Got to see the oncologist today.

The PSMA scan shows that PCa is not back in the prostate area......

It is however in a rib ( left 9th ), T4 vertebra and right Ilium......

The Oncologist is going to discuss at the next MDT ( next Wednesday ) the possibility of radiotherapy to these three areas,

As they have only just started doing this treatment at Preston she says I may have to go to the Christie's in Manchester for the treatment to the T4 vertebra..........I'll go anywhere to give it a try....

She also said it could take 2-3 months to sort the treatment.

PSA risen to 6.4 from 4.1 15 weeks ago.......that's a slight slow down on the rate that it has been going up.......

Has anyone else had this treatment and if so how did it go and how are you doing....

Shaun

User

Posted 26 Jul 2021 at 17:27

Hi Shaun I had 3 lots of spot RT. Two to spinal areas and one to right ribs. I can only have 3 more in the future if needed. That’s because although the RT zaps the cancer , it also zaps your heart , lungs , trachea , stomach etc. Any tissue that it passed through. At Southampton it’s a day case walk-in centre as long as you’ve been forwarded for it lol. You turn up at 8am and leave at 4pm.

My side effects were quite bad with swallowing problems , sore throat , breathing difficulties etc but they passed in about 6 weeks. The actual treatment ( after a planning scan and permanent tattoos ) takes about 10 minutes and is quiet and painless. The effects come later. Good luck and best wishes

User

Posted 26 Jul 2021 at 18:31

Thanks Chris

User

Posted 26 Jul 2021 at 19:04

Just to add, many men don't have any side effects from targeted RT to bone mets except a reduction in pain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2021 at 15:53

Am I correct in thinking I am now incurable even if the do SABR to the 3 areas?

User

Posted 27 Jul 2021 at 18:10

Lyn is the resident expert , but I’d say if you have 3 distant bone mets then yes you are now incurable I’m sorry to say. Yes the RT can knock the relevant tumours back and give you time , but very likely more will pop up as time continues. I guess like myself you will now be on HT for the rest of your life or with ‘ holidays ‘ if you react well to it. Good luck

User

Posted 27 Jul 2021 at 18:19

They will be hoping that the SABR kills the mets so it is a curative pathway. As CJ says, there may be other mets that are just not showing on scans yet so the chance of remission is quite slim but they are chucking their best at it.

Edited by member 27 Jul 2021 at 18:21 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2021 at 18:45

Originally Posted by: Online Community Member

Am I correct in thinking I am now incurable even if the do SABR to the 3 areas?

That's a difficult question to answer because your cancer has travelled and may show up elsewhere even if the 3 areas you mention are successfully treated, but how long might this take? It is likely that if further spots occur you will need these to be treated systemically as there is a limit to how much RT you can be given. There are some other treatments like Lu 177 and other possibilities being developed, the success of which needs to be established. Such treatments may further extend your life but depending how well these work if and when specifically required and administered for you, one cannot say. I would not think of it in terms of being incurable but the remission you may have following appropriate treatment.

Barry

User

Posted 27 Jul 2021 at 18:58

Thanks Lynn…… s it usual for it to take 2-3 months to do the treatment ( that’s if the MDT ) give the go ahead…… when I saw the oncologist , she only had the report, she said she needed to see the scans to see that the 3 mets were suitable for the treatment …….

Chris thanks for your reply as well

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